When I was first diagnosed 1.5 years ago, I decided that how to "come out" to others about my PD would be my own, slow roll out and that decision was really good for me. I wanted to be the one to share in my large circle of friends, community acquaintances and colleagues, one by one. I didn't want people to "hear" and feel uncomfortable asking me about it. Increasingly, I am open; however thus far I've kept it confidential in my work; until it feels relevant to share with others (none of my symptoms are obvious - mostly stiffness and rigidity, but people don't see that!). Publicly, I still feel uncomfortable being specific that I have Parkinsons; I feel more comfortable saying I have a "neurological movement condition" - perhaps because for people without knowledge about PD, the word "Parkinsons" brings up such a frightening and negative image. So often I see the gasp of "how awful," and that makes me uncomfortable. Plays havoc with my long time identity of being a really healthy person! And there is always the issue of meeting someone new and when I choose to share my health condition or not. Curious to know how others feel about all of this.

17 Replies

I am very similar to you. Diagnosed nearly two years ago, at first only my husband and closest friends knew. I head up a small charity and I've told my two senior staff as I felt someone in the office needed to know but it's not generally known. I only told my two children (17 and 23) earlier this year. They asked two things: are you going to die? (not of this, no), and is it hereditary (probably not) and they have barely refered to it since. I hope my 86 year old mum need never know. I generally put my symptoms down to a dodgy back and trapped nerve (I have both those things and thought that was what was causing the problems initially). As time has gone on, I've told a few more friends. I get a bit more tired than I used to and they need to know.

My Parkinsons nurses thought it would be 'empowering' for me to share this at work. Luckily, my neurologist counselled caution. I'm glad I took his advice. Like it or not, people have misconceptions and I don't wish to be written off as far as my career is concerned. I'm fortunate in that I work part time so it's not too enervating and I can look after my health. I am a healthy person! I see this as a condition, not an illness. I know it is progressive but luckily I've seen only a slight downturn in two years. I'm taking aziclet and 4mg of ropinirole every day, plus Mucuna Puriens and that seems to control the symptoms ok for now. I find this site invaluable for information on managing it.

I have had PD for 11 years for the first 4 i told no one. Now i tell every body because you can not tell i have PD. i tell them how long i have had it and tell them if they know or know of anyone that has PD to get them moving and never give up. Took me 9 years to stop my PD and to get my life and i believe most PWP can slow or stop PD with the right combo of meds and exercise. It is hard but can be done.

Thank you for your reflections! I absolutely agree about the importance of educating others and being able to be authentic. . .but also agree everyone has to do it "their" own way. I am mostly convinced I will do really well; i am as busy and involved in my life activities as ever before, have a very positive attitude, have been majorly humbled by having this condition, exercise a lot and not letting it stand in the way. Hope you all have a good day!

5 months agoHidden

My only concern for not telling my coworkers is that Parkinson's is not just a movement disorder, its a communication disorder. It interferes with how your brain communicates with your body, your brain communicates with itself and how your brain communicates with other brains.

Thanks for sharing your 'coming out process'. I think there are factors to be considered... such as the PwP age and how obvious it is [that they have it]. Also it depends on how good [or not] you are at sharing personal stuff.

I was diagnosed 18 months ago and to the casual observer it is not obvious at all, plus I am a gorgeous, glamorous young woman (!), who thought beforehand, that PD was something old people got! Ah, but now I know the truth, sadly. Well I kept it to myself for about a year and was in no rush to tell anyone [being rubbish at sharing private things with others]. However my hubby persuaded me to tell some of our friends. [I think he was struggling with my diagnosis - and needed to talk to someone] And Oh boy! Was that difficult?

Well yes it was, but with hindsight I am glad that I did it. It was around that time that I took charge of myself, stopped feeling sorry for myself and joined a load of groups [previously I'd been on self imposed house arrest and barely went out - not even into the garden]. I'm not sure that I could have been selective about who got the info and who didn't... without putting anyone under stress to keep it 'mum'... but then we are all different and I am happy that you are coping well, and finding your own way through this terrible journey. Totally get what you mean by the "How awful" comment, I don't like that response one bit.

PS I was just kidding in my personal description - it's all a pack of lies, except to say that I am a woman...

Thanks a lot for sharing. I may have misrepresented my coming out process a little. I definitely initially shared with all my family and closest friends. It was just the public persona I took more slowly. My symptoms don't show either - now I tell people fairly readily, but it's still weird to share this because at the moment I'm doing it forces me to "be with it". Having said that, I am pretty realistic that I have this crazy condition, but telling others definitely makes it more real.

Wow, i totally believed you are glamorous. That's funny, I bet you are more than you admit, as we all know, glamour is bigger than magazine looks!